An ethnography of managing emotions when talking about life-threatening illness.

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Abstract

Aim: This ethnographic study was concerned with how dying patients, palliative care staff and family caregivers communicate about life threatening illness in a palliative care setting in Ethiopia. Background: Ethiopia, as a developing country, has limited resources for caring for those with life limiting illnesses requiring end of life care. However, palliative care was supported by local champions in Ethiopia and by the Federal Ministry of Health. Introduction: The disclosure of bad news was discouraged because it was believed that such disclosure may lead to further distress and to loss of hope. Methods: Non-participant observation amounting to 276 hours of observation and ethnographic interviews with 4 patients, 6 family caregivers and 5 palliative care staff during two periods of data collection (November 2011-January 2012, May 2012-August 2012) in Addis Ababa, Ethiopia. Findings: Various communication strategies were used by palliative care staff to create openness in communication with patients and family caregivers about terminal illness and dying. Ultimately palliative care staff deferred to family wishes about significant news disclosures, in order to avoid upset. Family caregivers were found to avoid disclosing news of a terminal illness to their family member and wished to keep the patient in closed awareness. In contrast, it an open awareness context existed between palliative care staff and family caregivers. Discussion: In managing truth telling in different cultural settings, medical, nursing staff and health policy makers need to take into account the various awareness contexts highlighted in this study. Palliative care staff should consider how actions such as protecting patients from upset may inadvertently deny the patient the right to exercise control. Conclusion and implications for policy: Health policy makers should ensure that the design and implementation of palliative care services should not be a wholesale adoption of Western style services but assure that such services are adapted to reflect the religious, cultural and social needs of the community. Foreign workers and volunteers who deliver palliative care services and education in Ethiopia should reflect local religious and cultural sensitivities.

This is the peer reviewed version of the following article: Ayers N.E., Vydelingum V., Arber A. (2017) An ethnography of managing emotions when talking about life-threatening illness. International Nursing Review, which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/inr.12356/full. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.